Conferences and Community

3 min read

As mentioned, last week I was in Luton on Saturday for the Luton Walk of Hope.  

What an intensely moving afternoon it was and I was proud to be a part of it.  

I struck up a conversation with a fellow walker who lived in County Louth, Ireland.

She had read about the walk on social media and had hopped on a flight to Luton from Dublin to take part in the walk before returning home the same day. 

She was on her own. 

Her daughter, Ava died from a Glioblastoma in 2019 – she was in her early 20s.

For a day, in person, and for as long as she wants to virtually, she joined our brain tumour community.

A community that across the country on Saturday walked and remembered too many lost family members, many of them children, and dreamt of a better future for those who have a brain tumour diagnosis. 

In Luton we were joined by local MP and Officer of the All Party Parliamentary Group on Brain Tumours (APPGBT) Sarah Owen. 

Sarah became engaged with us through her constituents Khuram and Yasmin and the story of their daughter Amani – so many of the Luton walkers knew Amani and her legacy was so keenly felt on Saturday and resonates at Westminster.  


We have very nearly gained the newly required 20 members of the APPGBT and so many of these MPs have become part of the APPGBT due to the stories of their constituents.  

It is time again for us to engage with our MPs and request that they join the next meeting of the APPGBT. 

We must ensure that on the 14th November we have a roomful of Parliamentarians keen to hear about why we campaign and what they can do to support and make change happen.  

Here is the template invite to email your MPs.  

Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me ( 

Subject; - APPG on Brain Tumours 14th November 17:00 – 19:00 Committee Room 15   

Dear <Your MP’s name> 

The APPG on Brain Tumours will be taking place in Committee Room 15 on Tuesday 14th November from 17:00 – 19:00 and will be chaired by Derek Thomas MP. An agenda and a briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d.

As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and join that meeting. 

It would be hugely appreciated. 


<Your Name> 

<Your postal address and postcode> 

Alongside emailing your MPs this weekend we hope that any of you reading this who haven’t done so yet will sign the #BrainTumourPetition which will sail past 58,000 signatories this weekend. 

There is another petition of keen interest to our community concerning access to Vorasidenib in the UK.

The details of the petition are that trials of the drug Vorasidenib, carried out by the company Servier, in the US and other countries on Low Grade Glioma (LGG) brain tumour patients proved to be successful by way of a longer progression-free survival time.   

However, Vorasidenib is not currently available for UK LGG patients.

This petition, calls on Servier, as a matter of “extreme urgency”: - 

  1. To make an application to the Medicines & Healthcare Products Regulatory Agency (MHRA) for Vorasidenib to be made available under the UK Early Access to Medicines Scheme
  2. To make Vorasidenib available to all UK patients where supported by application from an oncologist by way of: -
  3. a) inclusion on a UK expanded access programme or
  4. b) access through a named patient basis

Brain Tumour Research was pleased to take part in the Health Charity Showcase 2023 at this week’s Conservative Party Conference.

Organised by Hanover Communications the event showcased the invaluable contribution that health charities make across the patient pathway. 

The Secretary of State for Health and Social Care, Steve Barclay, made a speech at Tuesday’s event and was positive about the future of health in England.

He said that medical advances would help bring important changes to the health system and that we needed to “change how we deliver services.” 

He said a more holistic approach was needed, given the number of health conditions. “That’s what the Major Conditions Strategy is focusing on. And we have got to make sure that we take people with us.” 

He continued, “We are trying to get more people onto clinical research trials, and I believe the recommendations from the James O’Shaughnessy Review will help to speed things up.” 

The Health Secretary ended by thanking the assembled charities for everything they do saying, “We would like to work in partnership with you. I think we can all see the need to deliver change given the advances in medicine, the challenges of the backlog I think the trust you have with the public and the convening power in the Department is the reason why we can do great things together.” 

Before leaving, Brain Tumour Research managed to speak with Mr Barclay along with our charity colleagues at the MND Association.

We asked the Secretary of State about the deployment of ring-fenced funding for both disease areas.

Mr Barclay stated, it was “a priority to unblock this funding bottleneck.”   

We look forward to taking the Health Charity Showcase 2023 to Liverpool and the Labour Party Conference next week. 


 Steve Barclay 

Our Policy and Public Affairs Manager Thomas Brayford (pictured above in the striped tie alongside Mr Barclay) said: “We had some good conversations at Conference with Health Minister, Lord Markham, and the Secretary of State about the deployment of the £40 million for brain tumour research. Now we need to see action. Those with life limiting diseases like brain tumours do not have the luxury of time!” 


Lord Markham and Thomas in Manchester 

There were other political stakeholders Thomas met this week as you can see from these photographs. 

Elliot Coburn MP and James Morris MP 

Dr Sandesh Gulhane MSP and Aaron Bell MP 

You can see that we had laminated pledge boards in our arsenal for these ‘photo ops.’   

Like the T-shirts and the hats in the photo at the beginning of the update these laminates are what is known as ‘on brand.’ They are consistent with the Brain Tumour Research visual identity and this consistency is so important because whether we are in the community or at a conference we want everyone to know that we are Brain Tumour Research and we are making a difference.  

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